Sleepless and Spiritual

As many parents of disabled people know, having an incontinent child can be upsetting. We usually just get on with it, wipe them up, clean change, get up and go, no problem, but from time to time, we just look at them, and their size, look at ourselves, the streak marks the inevitably end up on our fingers, the unpleasant aroma, the seemingly lack of care from our child, and it just gets to us.

Yesterday, when my Cri Du Chat syndrome suffering daughter came for her weekly visit, this time extended to five days as it's the holidays, she did her usual of emptying her bowls a few times. I don't know if she holds onto it or if she just eats extra food on Thursdays, but it is a habit now. I ended up running out of wipes, so we went to the shop to get some more. They had also run out, and the other shop is a pain to walk to at the best of times, and we were both tired. So we went home, and there you go, she did another one. I decided to use toilet roll this time, as a last resort. I think we all do this, wet it with warm water and then try to keep it in one piece while we scoop the crap from the skin. It did work a bit but it soon ran out too, there was a lot to scoop.

My daughter, in fits of laughter at my plight, had to be cleaned by one of my old t shirts. I wet it and threw it away after, not going to wear that again. I had already begun to feel the strain at this point, and when in half an hour's time, another nappy became filled, I just became upset. I dutifully cleaned her, using another two old t shirts, RIP, and then sat down and sobbed. Because she doesn't like me to have emotional reactions to things, her response was violence. I got beaten over the head and had a few hard plastic toys thrown at me, was bitten, punched, kicked and scratched. In the end I resorted to restraint and leaving the room myself. She's nearly twelve years old and I am not prepared to risk myself to any large degree.

Since she'd fallen asleep, merely twenty minutes later, and I'd given myself a couple of hours to sit and be, I did the extra couple of hours worth of cleaning I have to do after her days here. With the amount of food dropped, and litter on the floor, toys, bits, and screwed up important pieces of paper, I really felt sad about the situation. For over ten years, every weekend I have dedicated to caring for my child, and with my own mental health issues I have, the struggle is taking its toll with each year she grows. Now that I've been made to pay bedroom tax and I was declared fit for work, despite having problematic mental health and with no ability for a secondary parent to claim any kind of child support, disabled or otherwise, I just felt at rock bottom. I work really hard as a self employed person and as it's early days, year two, I'm still barely cutting even.

It just felt like it was all too much, my social life is gone, my money is drained by the bucket load, and my home which I am very lucky to able to live in is a pig sty, smelling of adult sized nappies filled to the brim. I knew that life could have been so different if she wasn't with this condition. I'd be able to ask for time off, I'd be able to keep a nicer home and I'd likely feel safer too.

But then today, my perspective changed. We were playing in the garden, beneath some fluffy but rather angry looking clouds. We were having a nice day, I was chatting to one of our neighbours, as we live in a block of flats with a shared garden. There are no animals allowed in our building, but the nice houses across from us do of course have cats and they do of course come onto our lovely lawn the do their business. My little girl fell flat into one of them, hands first, covering self and yes, another one of my t shirts. She loves to wear them.

After cleaning her up, refusing to allow the knowledge of what it was I was touching and wiping around with soap and water along with her hands, again and again, to get to me, chucking the t shirt in the bin, and sitting down, a small while later, she filled her nappy. By this time I'd got some wipes but the general routine is the same. I remembered my emotional breakdown from the night before and then I realised that her own mess is nothing compared to what had happened earlier. I was far more disgusted and revolted by the fact that she's fallen in cat shit than being covered both cheeks legs and back in her own.

There comes a point when we have to forgive our kids for having their issues, and yes, it is not pleasant to be wiping a twelve year old girl's bum twice or more a day, but I am glad that I do have her at all, and that I'm strong enough, wise enough, and patient enough to be a good father for her. If I see that cat though, I'll box it up and send it to Korea.

Author

This website is a personal site written and edited by me, Rowan Blair Colver. This website contains affiliate links which are delivered at no extra cost to the customer but also provide a commission to me if you choose to make a purchase.